Illinois · Nonprofit
NEUROFIBROMATOSIS MIDWEST
NEUROFIBROMATOSIS MIDWEST (Illinois) receives grants from 15 organizations whose IRS filings report $46,660 to it, the largest being AMERICAN ONLINE GIVING FOUNDATION INC ($25,166). 6 of them have funded it in more than one year, and 72% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $327k
- Funders on record
- 15
- Grants received
- $47k
- Net assets
- $377k
What Neurofibromatosis Midwest does
Mission
To improve the lives of children, adults, and families impacted by neurofibromatosis by focusing on and improving clinics, awareness, research, education and support in the states of illinois, indiana, iowa, kentucky, wisconsin, and the eastern half of missouri.
As stated on its FY2025 Form 990.
Programs
Research/clinics/improved care Neurofibromatosis Midwest provides direct grants for research and research support. We also work with clinics in our region to improve care and access to care. Additionally, we work with the nf community and many other resources on additional programs or initiatives to improve the quality of life and care for nf patients and their families.
$209,298 spentof which $42,096 as grants95% of program spendingSupport/education/awareness Neurofibromatosis Midwest provides education to individuals and families with neurofibromatosis, to the medical community and to the public through an annual symposium; smaller local meetings; and printed and online materials. We provide free packets of information to newly diagnosed families and phone and online support. An annual grant is provided to send children with nf to camp. We also provide materials and opportunities to raise awareness.
$10,000 spentof which $10,000 as grants5% of program spending
The 2 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $219,298.
The organization over time
Each line starts at 100 in 2018, so what you read is the shape rather than the size: 150 means half as much again as 2018, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2023 to 2024, from $294k to $366k (+25%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2021 17%. Grants only. Government contracts and fees sit inside program revenue.
94% of NEUROFIBROMATOSIS MIDWEST’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Board chair
Denise Dulceak
Board chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2018 → 2023: the base broadened from 2 funders to 4 funders, grant income rose $110 → $8k.
3 of 15 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 72% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of NEUROFIBROMATOSIS MIDWEST’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
NEUROFIBROMATOSIS MIDWEST leans on a few funders — its largest provides 54% of grant income and the top three 76%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
82% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund NEUROFIBROMATOSIS MIDWEST.
Largest funder’s share by year: 2018 91% · 2019 98% · 2020 100% · 2021 36% · 2022 79% · 2023 64% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
25% of NEUROFIBROMATOSIS MIDWEST's funders are still giving 3 years after their first grant; 40% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
72% of NEUROFIBROMATOSIS MIDWEST's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $13k that is directly attributable, 76% of it comes from funders outside Illinois, across 7 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $33k arriving through sponsors registered in 3 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
NEUROFIBROMATOSIS MIDWEST runs a healthier operating margin than half of the 7,883 health nonprofits its size.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like NEUROFIBROMATOSIS MIDWEST
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Illinois
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
81% of spending goes to programs.
Governance
Public support
98%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 3 states
Screen this organization
A dated, signed PDF of the compliance screen for NEUROFIBROMATOSIS MIDWEST: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds NEUROFIBROMATOSIS MIDWEST?
- NEUROFIBROMATOSIS MIDWEST (Illinois) receives grants from 15 organizations whose IRS filings report $46,660 to it, the largest being AMERICAN ONLINE GIVING FOUNDATION INC ($25,166). 6 of them have funded it in more than one year, and 72% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does NEUROFIBROMATOSIS MIDWEST have?
- IRS filings report 15 organizations giving $46,660 in grants to NEUROFIBROMATOSIS MIDWEST, 6 of which have funded it in more than one year.
- Who is the largest funder of NEUROFIBROMATOSIS MIDWEST?
- AMERICAN ONLINE GIVING FOUNDATION INC is the largest funder on record, with $25,166 in grants. The full list of funders is on this page.
- How can an organization like NEUROFIBROMATOSIS MIDWEST find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Illinois. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2018–2025), and the filings of 15 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing